Hi guys, I'm new to this site but have to say that over the last few weeks your info especially about Prednisilone has been invaluable....quite frankly I dont know what I would have done without your comments about lowering dosage etc. Ive been off work for 4 months now but only in the last couple of weeks has anybody put a name to my illness. From very early on I thought I had Polymyalgia but my doctor insisted I did not. After going to opticians and getting specs replaced in November 2010 and having a second opinion in Feb that my eyesight was fine the optician wrote to my doc to suggest I was referred to an Opthalmist because of the pain in my right eye and head. I had a Temperal Artery biopsy which returned a negative result this coupled with the fact that my ESR was only 20 convinced him that I wa suffering from nothing more than 'Neck and Face' pain !! If only!! To cut a lonnnnnng story short he prescribed 15mg of Pred but when this didnt work upped it to 30mg. He told me to take 15mg in the a.m and 15mg in the p.m (before 3 oclock as I wouldnt sleep at night) He failed to tell me that I was only supposed to do this for a couple of days so for 9 weeks I have been taking medication incorrectly Now trying to reduce dose is playing havoc with me..I felt so ill sometimes, as he told me to reduce by 5mg daily with the result I couldnt even get out of bed and couldnt understand why. It was only due to talking to PMR helpline that I found out what was wrong and confronted him with my new found knowledge to which he replied I was supposed to take them all in the a m in one hit. ( he hadnt told me that bit) My concern now is that the pain in my head and eye appears to get worse by the day I have blurred vision double vision and tender scalp but he still says I dont have GCA. Im terrified I'll go blind at any minute but Im sure I read somewhere that if you have this disease there is no pain in eyes. Does anyone know if this is true? After much pleading I now have Rheumy appointment but thats not til next month and the wait is torture. Do any of you PMR sufferers get these horrible pains in head and eyes? I am very scared as it seems no one will take me seriously. My company sent me to private doctor in an effort to help me and the only thing that makes me feel any better is that he said he thought there would be a significant change (i.e I would have developed far more serious symptoms by now if I had GCA. Your information has as I said been invaluable to me ,can any of you reassure me in any way? Im sorry to ramble on but its been a horrible road to travel and I can see that I havent travelled it alone!!
Thank you again for ypor help and advice
Best wishes to you all and hopes for better days
Jay D
Oh Jay I feel for you, but firstly a big welcome and I'm glad you've found us.
I have both PMR and GCA (started 40mg of Pred just over 4 years ago, now trying to get off 1mg to zero!)
Although a biopsy is the recommended procedure if GCA is suspected, I know of one person who had 3 negative results, in spite of which she was eventually diagnosed with GCA because a high trial dose of Prednisolone gave such relief.
Although ESR and CRP blood test markers are usually high in the case of PMR/GCA, not everyone has abnormal results.
The 30mg dose you were prescribed is not sufficient to control the inflammation of GCA.
I had severe head pain, tender scalp,jaw pain on chewing, disturbed (blurred) vision with eye pain, nausea and vomiting and fast weight loss. Not everyone gets all these symptoms.
Have you got any bulging of the vein from the temple area down the side of the eye and can you feel a pulse in that area?
Jay, go straight to A&E and tell them your symptoms and your concern about the possility of losing your eyesight - the starting dose you have been given is not high enough to control the inflammation which is borne out by the pain you are in. I had relief within just a few hours of commencing on 40mgs.
If you go to the PMR/GCA North East Support site you will find professional guidelines for the diagnosis and treatment of GCA - you can print this off and take it to A&E. You have nothing to lose and everything to gain. We have advised others posting here and on the American forum similarly and it has not been in vain!
My very best wishes and do come back and let us know as we'll all be thinking about you.
MrsO
Jay
All I can add is do as MrsO says. A Biopsy does not always show GCA is present.
Go to A&E and ask for the Consultant on A&E if you get nowhere.
The website MrsO refers to is www.pmr-gca-northeast.org.uk
Under Useful Information, the British Society of Rheumatologists Guidelines issued June 2009 on both PMR and GCA are under that heading. They are also posted on the NHS and BSR websites.
Download, print and take them with you.
Kick up a fuss, your eyesight is precious and if it is GCA and not treated timeously you could lost partial or total and once it is gone - its gone.
If we are wrong, no matter, your sight is the most important thing. Get it checked out.
They've both said it - don't wait for the rheumy. Either go to to A&E and tell them your history and symptoms or go to a proper poticians - one that does proper eye exams, not just hands out specs. They should also be able to see if there is any cause for concern and will send you to hospital if necessary.
And for further info so that you know how to answer questions:
The biopsy of the temporal artery is diagnositic if positive - it doesn't rule it out if negative. The giant cells they are looking for are not a close \"carpet\" on the inside of the artery and there can be considerable areas where there are none. The biopsy needs to be at least 2cm long and all of it examined - and preferrably a sample taken from both sides. To look at it it is sliced - a bit like a cold meat sausage on the butchers slicer - into microscopically thin slices and these are put onto glass slides so they can be looked at under a microscope. They select lots to look at and it is quite possible they didn't choose the right slides!
One in five patients with GCA do not have raised ESR or CRP levels so that is also not an argument - and this is more so for younger patients, although you don't say how old you are.
The temporal artery is used because it is easy to get at but it may not always be as involved as other arteries in the head. The scalp problem is typical as are the blurred and double vision - and if you have either of those you need to see a specialist pronto anyway. Even if you had no pain in the eyes they are of concern and if you also have this pain it adds to it. If the TA biopsy is negative but the clinical picture is right they are supposed to go on the clinical picture.
Good luck, but don't feel you have to give in - whatever you have wrong, it needs to be dealt with and soon,
Eileen
Thank you all for your advice...the problem is that my husband took me to A&E weeks ago but the doctor flatly refused to even consider I had PMR let alone GCA , he said I was too young (56) and had to be at least 80!!!!! Quite an argument ensued but in the end to no avail.
None of the doctors I have seen will consider GCA. I get the feeling my own doctor wants the rheumy to make the decision ...hes concerned about the high dose of steroids I think. (I suffer from high blood pressure and have had an ulcer in the past.) As I said though had I been perscribed them correctly in the first place who knows.
I've got myself down to 22mg now and do get quite a lot of relief from head and eye pain so maybe it isnt GCA? Its only early morning for a couple of hours until I've eaten and steroids have kicked in that its quite uncomfortable, and the odd occassion when I've overdone it. Are you saying that if I did have GCA that 22mg wouldnt relieve symptoms? I understand that I'd need a far higher dose for GCA .
Your advice is invaluable. As I said yesterday I've learnt far more from you and the PMR site than doctor has ever explained.
I'm very grateful to you all
Best wishes
Jay
Jay
Yesterday you said that \"the pain in head and eye appears to get worse by the day\" but today you say you are \"getting quite a lot of relief from head and eye pain apart from in the early morning until the steroids have kicked in\". This is a little confusing and it makes it difficult for us to help you unless we know exactly how you feel.
Having said that, I am shocked at the response you got on the occasion you went to A&E. He appears to be totally ignorant of the signs and symptoms of PMR and GCA. Of course, you're not too young at 56 - I have heard of a young lad being diagnosed with Temporal Arteritis (GCA). It just sounds like everyone is 'passing the can' here, and I would be considering seeking a private appointment - that is something that I eventually did along with a couple of other people who post here.
I sincerely hope that for your sake you are not suffering from GCA.
MrsO
Hi Mrs O, Thank you for a prompt reply. Im sorry to have confused you. I do get a lot of relief from head/eye pain with steroids (not GCA then??) but when I suffer the pain it always seems worse than ever. Especially as Im trying to lower steroid dosage. Stabbing pain in both my eye and temple and shooting pains in my scalp. This by the way was where I started suffering about a year ago way before or the arm, hip neck pain etc of PMR started.
I have spent a considerable ammount of money on private consulations scans (on sinus etc.) As I said my company are thankfully sending me to a private doctor in thier effort to help me ...for which Im very grateful. I should get an appointment within the next couple of days when hopefully someone will be able to help me. If only to allay my fears.
More and more though I realise its such a grey area isnt t? With no real definitive way of diagnosing if blood and biopsy are normal. My only comfort is on one occassion when I went for a private consultation the doctor thought that if I had GCA I would probably have developed at least some sight loss by now since 'it happens so quickly normally' Is this the case? Thats what I hold on to at present in any case.
Once again thank you for your advice
Best wishes
Jay
Do these doctors work from a cheat sheet or something? When do they switch off their brains or were they ever switched on? Do they understand \"maybe\" or \"maybe not\" or are we all supposed to conform to a stereotype?
I have said previously on here that one of the very first things we were taught to keep always in mind at Teacher Training college was INDIVIDUAL DIFFERENCES AND THE CURVE OF NORMAL DISTRIBUTION. I doubt I would have qualified academically for med. school but I can't help thinking that some that do would ( and do ) fail in the common sense and keep an open mind department.
I thank my lucky stars for the medics I have met so far and hope my luck holds.
Hi again Jay
Please don't apologise for MY confusion! It's just that we so want to try and help on here - especially so where GCA and eyesight are involved - and to do so we obviously need to be aware of all the facts. As I mentioned previously, we have given the same advice to seek immediate investigation to a few other posters here and one on the American forum and they were then diagnosed with GCA, with at least one person being hospitalised.
Yes, it is, as you say, a \"grey area\" and more so to some doctors than others unfortunately but as you say you get a lot of relief from head/eye pain with steroids, then it does point to it being GCA.
Having said this, however, in the past I have experienced the \"stabbing\" pains to which you refer and \"shooting pains in the scalp\" - a sudden electric shock type feeling and this has been put down to neuralgia. In fact, I had dental treatment several weeks ago which went close to the nerve following which I suffered with exactly those pains for over a week. That seemed to set something off and if I now go out in a strong wind without head covering the pains recur. Has trigeminal neuralgia been ruled out at any of your consultations?
It is certainly true that sight loss with GCA can happen suddenly which is why we showed our concern for you, and the fact that you have been suffering for over a year without any sight loss has obviously led the one consultant to consider that you aren't at risk.
You have all my sympathy - you have obviously been suffering for a very long time and I do so hope that when you see another consultant, who I presume is a rheumatologist, in the next couple of days you will have a more satisfactory outcome.
My very best wishes and do come back and let us know how you get on , Jay.
MrsO
Jay - once upon a time doctors had to diagnose using something called clinical skills - nowadays there is a great reliance on the \"laboratory\". Unfortunately, they don't understand the statistics of normal distribution, as Betty says, and fail to grasp that not all patients present the same. What utter ignorace and arrogance.
The ages they quoted at A&E were %$£\" - the Guidelines, which you can get a copy of for yourself on the website MrsK has given you the link for, have been amended to say \"over 50\" instead of over 55 and the youngest patient diagnosed with PMR and appearing in the medical literature was 26 years of age - diagnosed on the basis of clinical history and response to steroids. I think I googled \"youngest polymyalgia patient\" or something like that to find it - hardly rocket science then. Once you have PMR you are at a much higher risk of developing GCA so you still need to keep an eye out for the warning signs.
Yes - loss of vision with GCA is sudden when it finally happens, but the symptoms can have been there for some time. And once it's happened that's it - no going back, it's not curable. So the idea is NOT to take the risk and deal with it before it gets that bad. As a medical emergency - hence why we're suggesting getting it looked at now. My own optician (a wonderful man and into all sorts of research) told me last time I saw him that an optician was facing investigation because a patient (client?) went to him, he thought it might be GCA but decided to wait overnight before sending them to hospital and by the next morning it was too late. It all depends how bad the arteritis is and where is most affected - as I say, it may not be the temporal artery that is worst, it can affect any artery.
Most PMR will respond to 20mg and relieve most of the symptoms - if it doesn't then it possibly is something else and that needs to be looked at. If you have GCA, the dose you are on will relieve some of the problem - just not all of it, it will bring the inflammation down to a lower level. Was the pain better at 30mg? If you don't get a private appointment soon, do you have another A&E department or an eye hospital you could get to? I'm appalled at how you have been treated and I'd be looking for an explanation - and I think I'd be looking for another GP who can relate to their patients. Wonder how they'd feel if they had the sort of symptoms you have had and noone took them seriously?
Eileen
Jay
Please heed all the advice you have been given.
I have just spent an hour talking to a lady who has lost the sight in one eye.
Yes, she was bounced around.
I have had contact with three people in the last two weeks and each and everyone of them has turned out to be GCA. Luckily, each and everyone of them was diagnosed in time.
I am sad.
Jay - it's just registered what you said the doctor said \"you'd have developed SOME sight loss\". There isn't \"some\" sight loss - it's not macular degeneration where you lose a bit of the field of view - the vision one eye is gone. And once one is affected it is much more likely the other will be affected too. You only have two eyes. I'm speechless.
best wishes and do keep us informed of how you get on,
Eileen
Hi Jay.....cannot add anything to the wonderful advice you have already been given by these fantastic ladies.....take heed and hope all will be well..... :roll:
Hi Jay,
I'm with the other ladies....what does your doctor want :?: ...Wait for you to lose your sight and then say \"Oh yes...thought it was GCA??\"
Get thee to an opthalmologist ASAP or an A&E is my advice, and if your doctor is offended, then so be it :roll: :wink: .
This is far too potentially life-impacting to be worried about other peoples feelings as you are the one that will have to live with the consequences :cry: .
Hopefully, it will not turn out to be GCA, but you will forever regret it if you don't do all in your power to check.
good luck and keep us posted.
Best wishes, pauline.
Thank you ...all of you. Unfortunately its been such a battle. Ive been going to the same doc for 34 years, a very knowledgable man. Alas Im assuming that it is because of cuts im my particular surgery that I have no option to go to him as there isnt anyone 'better' in our area - in fact there doesnt seem to be anything to choose between them! Ive always had complete faith in him but I'm thinking like a lot of people these days hes completely demorolised in his job and probably cant fight the system either!!!! And when I didnt hear about my rheumy appointment for 3 weeks and phoned to enquire why I was told the referral was only written 2 days before because they were short staffed...there really isnt any hope is there?
We have had a huge influx of people into our little town due to construction with another 400 houses under construction but neither of the (2) surgeries which cover two sizaleable towns and countless villages have been extended - likewise the schools. believe it or not. And still they are taking on patients.
One of the very worst things that Ive experienced over the last 14 weeks is having to drag myself out of bed in the morning in order to queue for an appointment to see him as no one can ever get through on the phone any more, problem is everyone else has latched on and I have to get there earlier each time.....it is soul destroying....and Im not always 'lucky' anyway. So I have to repeat the process the following day since they only release book on the day appointments.
I only mention this because its such a battle to get anyone to listen. so please dont think me apathetic with my health, Im mindful of the consequences just I really dont know where else to go for help. Believe me I have quite honestly badgered them for weeks!
One more question though. When I saw him beginning of week and mentioned my blurred vision again he said I may have ( temporary) Diabetes due to the steroids. Is this possible or just something else hes cooked up to keep me quiet for a while? In any case he asked that I took a sample of urine around for testing.
Once again thank you for you support and advice , I cant even remember how I found this site now but I'm so very glad I did.
Very best wishes to you all
Jay
Jay - yes, it is possible for the steroids to mess up the blood sugar levels enough to make you technically diabetic. As diabetes can result in visual problems, I'm glad he has a) taken it on board and told you and b) asked you to take in a specimen.
You might find that they ask to do other tests for a baseline result, but I am really pleased that he has done this for you now.
Nefret
Hi Jay...me again...I had some eyesight problems about 6 weeks ago that were attributed to the steroids :roll: .
That said, what you are experiencing seems to be a different problem and one that an opthalmologist as opposed to am optician, may be able to give a concrete opinion on.
I am really sorry that your practice seems so over-whelmed with patients, but you MUST fight for your own health here as this is potentially too serious to let slide, and if that means going to your local A&E and kicking up a fuss, then so be it.
Hope you get some better treatment soon.
Best wishes, Pauline.
Jay
Nefret has been able to answer your query regarding diabetes from her personal experience.
Another possibility is that steroids can cause cataracts and cataracts can cause blurring but I'm assuming that with all your optical examinations cataracts would have been mentioned if they were apparent. I certainly have developed cataracts as a side effect of the steroids. I have recently been prescribed glasses for driving and for tv and amazingly these have relieved the blurring. I also used when driving but again, with the glasses, which are slightly tinted, there is no problem.
Jay, we are all terribly concerned about you and the situation you find yourself in - we have heard some bad experiences in the past leading up to GCA diagnosis but I think your's is the worst.
There should be absolutely no reason why you feel you can't go back to A&E - there will probably be a different consultant on duty to who you saw previously and surely he/she will be sufficiently concerned about someone who presents with a risk of losing her eyesight to take it seriously - it's their job.
If it were me I would be cataloguing all this and taking it to the local MP....I did this once and received a visit from a councillor followed up with a letter from the MP.
I do hope you've printed off the Guidelines and read them (they have been produced by medical experts) - now take them to A&E, and no I don't think you're being apathetic with your health at all but just persistently coming up against pathetic people.
MrsK who has also replied to you, has GCA, and she runs a very large support group in the North East of England which is affiliated to the new PMRGCAuk Charity whose Patron is a Mr Dasgupta, Professor of Rheumatology. She has widespread knowledge and experience so please do heed her advice.
Being a sufferer of GCA myself and knowing the risks, I wish you well.
MrsO
Jay - I don't think any of us think you are being slow about looking after yourself - what we are trying to do is give you the confidene and knowledge to be able to query what you have been told
your GP may be a very knowledgeable man but I could have doubts about his knowledge here. Urine testing is rarely used nowadays for the diagnosis of diabets as it is a complex subject and difficult to interpret. You have to have a pretty high level of blood sugar before it spills over into the urine via the kidneys if the kidneys are normal. It always was urine testing in the past but nowadays you take blood samples. I've experienced demoralised doctors too - they can be worse than no doctor at all. As for the referral to the rheumy being written 3 weeks after you saw him - that is not only disgusting but verges on negligence. To have to GO to the surgery to get an appointment is also appalling. The blurred vision could be due to diabetes though I would have thought it would take longer to develop than a couple of months but I don't think double vision is usual. By the way - are the visual problems worse in the morning when you first wake up or maybe after a doze rather than being similar all day? If so, that is quite typical in GCA.
I imagine you don't feel up to it but your husband may: the next step here with regard to the practice is to see the practice manager and contact your MP. In terms of your health - I really would try A&E again, making sure they really DO understand how ill you feel and the lack of response on the part of the GP. On the other hand - do you have a family member with a decent general practice? If you go to \"stay\" with them \"on holiday\" you can get an appointment with a GP there for urgent treatment/consultation. If your GP wanted a rheumatologist to rule out GCA he should have been on the phone to have you sent to hospital as an urgent referral as GCA is (or should be) regarded as a medical emergency. You don't make urgent referrals by writing a letter 3 weeks later. My optician puts his query GCA patients in a taxi or ambulance (if they don't have a driver handy) and sends them off to the eye department after a phone call to make sure they are expected. If he can, so can a GP.
I do so hope this isn't GCA - but a google of GCA and loss of vision by any of your doctors would have provided them with some interesting reading from a whole load of medical publications - not just wiffle on the internet - which would have disillusioned their obviously long-held misapprehensions.
Eileen
Hi Jay and welcome, there is a lot of experience on this site and good folks. They have been a great help to me. I have been suffering from eye and head pain similar to yours, I have had PMR for 30 months now and although the pred seemed to control it I had pain in my left eye, this was ignored by 2 doctors. It was only when I dropped to 5mg that the headaches and eye pain became severe. It was my optometrist who sent me to my doctor who sent me to my doctor for an emergency appointment. She arranged an emergency appointment with a rheumy who clinically diagnosed with GCA, she seemed think that I had always had GCA but it was being masked by the pred. I am waiting the results of a biopsy but this is likely to inconclusive because I am back on 30mg pred. I share your concerns. I have been told that if I have problems with my sight I am to go to A&E immediately. I think by this stage it will be too late. I am due to see the rheumy next tuesday so I hope something positive will come out of it. My experience with doctors has not been great but yours seems to be poor to say the least. The good folks on this site have given me the confidence to ask questions and be more demanding. I wish you well and please don't be fobbed off. Your sight is vital and if there is any doubt make a fuss, as the others have said, once it's gone it's gone. Please let us know how you progress.